Two former colleagues of mine – Rachael Litherland and Steve Milton – who run an incredible organisation called Innovations in Dementia have been awarded a Big Lottery Grant to run this new initiative which will provide people with dementia the opportunity to research their condition.

So good to see this happening. Who better to DEEP dive their condition and share the knowledge acquired than the people themselves.

If you click on the headline you will be taken to the Innovations in Dementia website.

People with dementia will be given a voice in research about the condition, thanks to over £700,000 of National Lottery funding, which will kick start the ground-breaking new project, Dementia Enquirers.

Working with DEEP, the UK Network of Dementia Voices, Innovations in Dementia will use the new National Lottery grant over the next three and a half years to develop a new approach to research, that is led and controlled by people experiencing dementia themselves.

DEEP is a UK-wide network of more than 100 community groups, with around 1,000 people living with dementia, who connect to support one another to get their voices heard. Innovations in Dementia will help them to undertake their own research into the condition, rather than being participants. This will enable people with dementia to explore how knowledge is acquired and applied in a way that feels relevant to their own lives.

They will be involved in identifying research priorities, and planning and undertaking their own research, with the help of small grants distributed from the new National Lottery grant. The project will also explore with people experiencing dementia the lessons that emerge from their work, and share this learning widely within the dementia field and beyond.

University researchers may be involved as advisors or have specified roles within the projects, bringing knowledge around research methods and approaches, and helping DEEP groups to create and deliver robust research projects.

People involved in DEEP will also be supported and trained to capture and share their findings in a creative way such as through film, music, poetry and photography.

This is thanks to support from the Big Lottery Fund, the largest funder of community activity in the UK, which distributes money raised by National Lottery players for good causes.

Rachael Litherland, Director of Innovations in Dementia, said: “We are so proud to have been awarded this National Lottery grant, and excited to be undertaking such ground-breaking work. We are confident that the project can influence the prevailing approaches in research – while bringing new respect for the skills, expertise and resilience of those who are living with dementia.”

Joe Ferns, UK Funding Director at the Big Lottery Fund, said: “We’re delighted to be funding this project, which puts people with experience of living with dementia at the heart of research into the condition. Thanks to National Lottery players, this important issue is being tackled in a way which helps people to feel more in control of their lives.”

Thanks for visiting my blog. I am the Executive Director at the Academy of Medical Sciences. NIHR National Director for Patients, Carers and the Public based at UCL. I was the NIHR National Director for Patients, Carers and the Public and Chair of INVOLVE from 2012 to 2019 and, before that, was the CEO of AMRC. I was awarded the OBE in the Queens Birthday Honours list in 2018. You can find out more about me on my bio available from the menu. The views expressed on this blog are my own.